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| rockin the superman curl |
A chronicle of my life events, including raising children with Asperger's syndrome, with Down syndrome and with love. Life, love and laughter, with a few unexpected moments thrown in for good measure...
Wednesday, January 25, 2012
(almost) Wordless Wednesday
I've got a whole giant update to write, but I HAVE to share a picture of Levi since he turned 7 months yesterday - revel in his adorableness; I do!!
Thursday, January 12, 2012
Gettin' Older
Well crap... I just realized that I'm getting older. In my head, I'm forever the 21-year-old version of myself, but with a little more maturity in my perspective on life. Occasionally, I'll catch sight of myself in the dreaded mirror. (gasp!) and remember that the phrase, "when I become a grown-up" may no longer apply to my situation. I'm there... I think...
What recently gave me a firm reminder of this was my daughter's seventh birthday. I simply cannot believe that I've been doing this whole parenting thing for seven loooong years. And yet it seems to have gone by in the blink of an eye!
Aside from the cats, Katelyn is the only other estrogen in the sea of testosterone in our home... She is my girlie-girl but also manages to fit in just fine with the rough-and-tumble boys. She loves barbie dolls, dress up, singing, crafts, Disney princesses and reading. Her favorite color is purple and can often be seen wearing three or four pieces of clothing in a monochromatic mashup!
She requested a Hello Kitty party and we ended up celebrating with a pajama/sleepover party. She loved every moment of it and actually thanked me for all the work into putting it all together. I hoped she would enjoy it because effective as of now, we are throwing parties only every other year. On the odd ages, they get a big party - on the even years, a dinner out with a cake and candles. It will save a ton on our budget and works out perfectly - with the four kids, we'll have one party roughly every 6 months. I don't think that plan could've worked out any better!
I look forward to many fun years ahead with this little girl, even as she become less "little" by the day. She's full of sass, which I admire (as long as she's not sassing me!) and she often makes me laugh simply because she's so much like me... but NOT me as a child... no, me now. Yikes! I suspect we'll often be butting heads in the future, but I hope she'll know that her mama will always be there for her, through thick and thin and that she's special to me because she's my girl and the special person who introduced me to being a mama.
Love you, Sunshine!!
What recently gave me a firm reminder of this was my daughter's seventh birthday. I simply cannot believe that I've been doing this whole parenting thing for seven loooong years. And yet it seems to have gone by in the blink of an eye!
Aside from the cats, Katelyn is the only other estrogen in the sea of testosterone in our home... She is my girlie-girl but also manages to fit in just fine with the rough-and-tumble boys. She loves barbie dolls, dress up, singing, crafts, Disney princesses and reading. Her favorite color is purple and can often be seen wearing three or four pieces of clothing in a monochromatic mashup!
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| Enjoying one of her favorite Christmas presents! |
She requested a Hello Kitty party and we ended up celebrating with a pajama/sleepover party. She loved every moment of it and actually thanked me for all the work into putting it all together. I hoped she would enjoy it because effective as of now, we are throwing parties only every other year. On the odd ages, they get a big party - on the even years, a dinner out with a cake and candles. It will save a ton on our budget and works out perfectly - with the four kids, we'll have one party roughly every 6 months. I don't think that plan could've worked out any better!
I look forward to many fun years ahead with this little girl, even as she become less "little" by the day. She's full of sass, which I admire (as long as she's not sassing me!) and she often makes me laugh simply because she's so much like me... but NOT me as a child... no, me now. Yikes! I suspect we'll often be butting heads in the future, but I hope she'll know that her mama will always be there for her, through thick and thin and that she's special to me because she's my girl and the special person who introduced me to being a mama.
Love you, Sunshine!!
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| No Plain-Jane Poses for This Girl! |
Sunday, December 25, 2011
Lots of News
It's been a busy couple of weeks. There was so much to do in preparation for Christmas and now it's all over. Well sort of - half of us ended up with a nasty virus so we cancelled plans with all of our Christmas visitors, which means that we still have Christmas get-togethers and gift-unwrapping to partake in once everyone is feeling better.
Levi turned 6 months old on Christmas eve and is now closer to age one than not! That's so weird to think about, but it's true! He's had so many changes and experiences in the last 2 weeks that I feel overwhelmed trying to write about them in a nice way. I'll do my best considering that I'm one of the ill today and I feel like the unwrapping, the cleaning and the living was just too exhausting today.
2 weeks ago, Levi participated in a swallow study to see if he was aspirating anything while eating. He was referred for this study because he sometimes would choke while taking a bottle or breastfeeding and would frequently become "junky" sounding in his throat after swallowing purees. The swallow study turned out just fine but with a recommendation from the speech pathologist to start OT or speech therapy to address the low muscle tone in the mouth. Otherwise, his structures are normal in his mouth and his swallow is safe.
I began trying purees again after we got the "all clear" and to my surprise, he didn't see to have the swallowing issues that were evident prior to the referral for the swallow study. But I'd made some changes per the recommendation of the OT who evaluated him. She suggested that I offer him a dry-spoon between bites to essentially give him two swallows per bite of food. She also suggested that I recline him more than what he was so he didn't have to work so hard on trunk control while eating. Those two changes seemed to have made the major difference for him.
So we started with bananas since he seemed to prefer foods with less flavor impact. He did fine with eating them, but became constipated quickly. Then I tried peaches to alleviate the constipation, but he didn't seem to enjoy eating them because the flavor was so strong. Also, with both of the fruits, he developed a rash again up around his temples while eating. I moved on to sweet potatoes and the rash didn't appear, but he again seemed to behave like the flavor might have been too strong. So finally I got some baby oatmeal cereal and some prune purees. Mixing the two together diminished the flavor of the fruit, and he really seemed to enjoy it! Plus, no rash... success!! Now I have to experiment with the other fruits mixed into the oatmeal to see how he responds. But I'm kind of waiting to see the effect that the current concoction has on his digestion. I need to know if it's slowing things down too much or if he'll be fine.
He's been refusing to take a bottle for a while and so it's been a challenge to get his vitamins and supplements into him. Now that he's taking some solids, I can mix in about half his vitamin and all of his zinc supplement on a daily basis, so I'm glad we've made that progress.
We're back into cloth diapers again. We took a break from their bulkiness (compared to disposables) in an effort to reduce the challenge level of reaching several gross motor milestones. Now that Levi can roll pretty well, I think any extra bulk from the diaper won't hinder his progress. Of course, this is always up for further evaluation. I ended up replacing all of the inserts for the medium sized diapers as the originals are over a year old and just weren't absorbing as much as they should have. Thankfully, this was only a $25 expense. That left enough money in the budget to splurge on a new diaper - a one-size elite with minky inserts from Fuzzibunz. Love it!!
Levi has made a lot of progress in learning to fall asleep with less help. His pediatrician recommended waiting until he is six months old before trying to enforce any kind of sleep schedule on him. Well, he's there and so I guess it's time to provide a little assistance. I'm not looking forward to this, but I'm hoping that over the next week, I can help him learn to fall back asleep when he wakes too early. Once this skill is learned, I'm hoping he can extend his morning nap to a full two hours and then work on his afternoon naps soon. As of right now, he's sleeping through the night consistently, going to bed around 6:30 or 7:00 pm and not waking up until maybe 6:00 am.
When he's on the floor, Levi is pivoting while on his tummy and moving all around by rolling side-to-back-to-side repeatedly! He can lie on his tummy and reach out with his hands to grab a toy and bring it to his mouth. His sitting is really good - with nearly a straight back. And if he's on a slightly soft surface, he can sit independently for just a few seconds. With his back to me or the couch, he can sit much longer with only the tiniest bit of support, like a tiny bit of his head touching. He can also stand in front of the sofa with only the sofa at his back for support. I believe his longest demonstration of this skill is about 8 seconds. Just gotta capture it on film!
His language hasn't developed much in the last month or two. It seems to me that he's still making mostly the same noises. I haven't given much thought as to whether that's good, bad or indifferent. I suppose I'll be inquiring about that at his six-month checkup next week. He does still smile a lot and although many of his laughs are silent, occasionally, we get a really good giggle out of him!
At this point in time, I would describe Levi as being serious, stubborn, observant, easy-going (when not being pushed to do thing he doesn't want to do!), funny and active. He's really starting to resemble Katelyn and Trevor in his appearance. If I had to make a prediction, I'd say he'll end up with hair somewhat close in color to Katelyn's.
His first Christmas was eventful in the sense that we ended up cancelling all of our visitors because Katelyn and Evan (and possibly Levi) were in the throes of some awful stomach bug. Additionally, all 6 of us are in various stages of fighting off a cold virus. We did not want to give THAT gift to anyone else. As for the actual day at home with all of our gifts to open, it went rather smoothly. Trevor was up at 6:30 am and managed to wait patiently for about 90 minutes before pestering about getting down to business. That required going upstairs to awaken Katelyn and Evan, who came downstairs with some protest. Katelyn managed to lie on the couch while we got started. Eventually, she worked up the energy to open her presents and then went back to the floor for further rest. Not too long after, she was carried upstairs for a nap. She woke up about 3 hours later, feeling much improved, though still sickly. Evan lasted all morning but was definitely ready for a nap when the time came. That age is definitely an enjoyable one - he opened 2 or 3 presents and wanted to play with them and had no interest in opening the rest. So, he's the only one with several presents still in their paper, waiting to be opened!
Levi enjoyed rolling around in the fallout from the unwrapping and even got to watch as Mom and Dad helped him unwrap his gifts. He received a little less than his siblings (though Mom purchased many of Evan's gifts with Levi in mind as well) but I'm sure he wasn't bothered by it. He got some small wooden toys and a plush toy for tummy time fun. He also got some big-boy pacifiers in bigger size than the ones he had (plus they have surfaces for teething). He received a growth chart to hang in his room and a birth-cerficate pillow. All his siblings have one and so he was happy to be included in the club! He received a bunch of snazzy new babylegs (cause he's sooo stylish!) and a drum to bang on when he's sitting up.
Removing the illness factor, it was a very pleasant Christmas day and in a way, it was nice not having to worry about getting ready to host guests. I seriously hope tomorrow holds great improvement for all of us, healthwise. And Levi has an appointment for his six-month pictures tomorrow, so fingers-crossed he cooperates with that. With the other kids, I have professional pictures of them lying on their backs in just a diaper, playing with their toes. Levi can do this, but doesn't hold on as long, so it may be tricky catching this shot. I think I'll be thrilled if I can just get a picture with him smiling - that's the one thing he doesn't seem to want to do often in front of a camera.
His Stats:
Weight: 18 pounds, 8 ounces (approx 68th percentile)
Length: 26.25 inches (approx 43rd percentile)
Head Circumference: 16.75 inches (approx 18th percentile)
Here's our slideshow from Christmas Day... just plain ol' having fun. Enjoy!
Christmas Day Slideshow
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| Christmas Eve 2011 |
Levi turned 6 months old on Christmas eve and is now closer to age one than not! That's so weird to think about, but it's true! He's had so many changes and experiences in the last 2 weeks that I feel overwhelmed trying to write about them in a nice way. I'll do my best considering that I'm one of the ill today and I feel like the unwrapping, the cleaning and the living was just too exhausting today.
2 weeks ago, Levi participated in a swallow study to see if he was aspirating anything while eating. He was referred for this study because he sometimes would choke while taking a bottle or breastfeeding and would frequently become "junky" sounding in his throat after swallowing purees. The swallow study turned out just fine but with a recommendation from the speech pathologist to start OT or speech therapy to address the low muscle tone in the mouth. Otherwise, his structures are normal in his mouth and his swallow is safe.
I began trying purees again after we got the "all clear" and to my surprise, he didn't see to have the swallowing issues that were evident prior to the referral for the swallow study. But I'd made some changes per the recommendation of the OT who evaluated him. She suggested that I offer him a dry-spoon between bites to essentially give him two swallows per bite of food. She also suggested that I recline him more than what he was so he didn't have to work so hard on trunk control while eating. Those two changes seemed to have made the major difference for him.
So we started with bananas since he seemed to prefer foods with less flavor impact. He did fine with eating them, but became constipated quickly. Then I tried peaches to alleviate the constipation, but he didn't seem to enjoy eating them because the flavor was so strong. Also, with both of the fruits, he developed a rash again up around his temples while eating. I moved on to sweet potatoes and the rash didn't appear, but he again seemed to behave like the flavor might have been too strong. So finally I got some baby oatmeal cereal and some prune purees. Mixing the two together diminished the flavor of the fruit, and he really seemed to enjoy it! Plus, no rash... success!! Now I have to experiment with the other fruits mixed into the oatmeal to see how he responds. But I'm kind of waiting to see the effect that the current concoction has on his digestion. I need to know if it's slowing things down too much or if he'll be fine.
 |
| 25 weeks old |
He's been refusing to take a bottle for a while and so it's been a challenge to get his vitamins and supplements into him. Now that he's taking some solids, I can mix in about half his vitamin and all of his zinc supplement on a daily basis, so I'm glad we've made that progress.
We're back into cloth diapers again. We took a break from their bulkiness (compared to disposables) in an effort to reduce the challenge level of reaching several gross motor milestones. Now that Levi can roll pretty well, I think any extra bulk from the diaper won't hinder his progress. Of course, this is always up for further evaluation. I ended up replacing all of the inserts for the medium sized diapers as the originals are over a year old and just weren't absorbing as much as they should have. Thankfully, this was only a $25 expense. That left enough money in the budget to splurge on a new diaper - a one-size elite with minky inserts from Fuzzibunz. Love it!!
Levi has made a lot of progress in learning to fall asleep with less help. His pediatrician recommended waiting until he is six months old before trying to enforce any kind of sleep schedule on him. Well, he's there and so I guess it's time to provide a little assistance. I'm not looking forward to this, but I'm hoping that over the next week, I can help him learn to fall back asleep when he wakes too early. Once this skill is learned, I'm hoping he can extend his morning nap to a full two hours and then work on his afternoon naps soon. As of right now, he's sleeping through the night consistently, going to bed around 6:30 or 7:00 pm and not waking up until maybe 6:00 am.
When he's on the floor, Levi is pivoting while on his tummy and moving all around by rolling side-to-back-to-side repeatedly! He can lie on his tummy and reach out with his hands to grab a toy and bring it to his mouth. His sitting is really good - with nearly a straight back. And if he's on a slightly soft surface, he can sit independently for just a few seconds. With his back to me or the couch, he can sit much longer with only the tiniest bit of support, like a tiny bit of his head touching. He can also stand in front of the sofa with only the sofa at his back for support. I believe his longest demonstration of this skill is about 8 seconds. Just gotta capture it on film!
His language hasn't developed much in the last month or two. It seems to me that he's still making mostly the same noises. I haven't given much thought as to whether that's good, bad or indifferent. I suppose I'll be inquiring about that at his six-month checkup next week. He does still smile a lot and although many of his laughs are silent, occasionally, we get a really good giggle out of him!
At this point in time, I would describe Levi as being serious, stubborn, observant, easy-going (when not being pushed to do thing he doesn't want to do!), funny and active. He's really starting to resemble Katelyn and Trevor in his appearance. If I had to make a prediction, I'd say he'll end up with hair somewhat close in color to Katelyn's.
 |
| Chillin' in a Cloth Dipe |
His first Christmas was eventful in the sense that we ended up cancelling all of our visitors because Katelyn and Evan (and possibly Levi) were in the throes of some awful stomach bug. Additionally, all 6 of us are in various stages of fighting off a cold virus. We did not want to give THAT gift to anyone else. As for the actual day at home with all of our gifts to open, it went rather smoothly. Trevor was up at 6:30 am and managed to wait patiently for about 90 minutes before pestering about getting down to business. That required going upstairs to awaken Katelyn and Evan, who came downstairs with some protest. Katelyn managed to lie on the couch while we got started. Eventually, she worked up the energy to open her presents and then went back to the floor for further rest. Not too long after, she was carried upstairs for a nap. She woke up about 3 hours later, feeling much improved, though still sickly. Evan lasted all morning but was definitely ready for a nap when the time came. That age is definitely an enjoyable one - he opened 2 or 3 presents and wanted to play with them and had no interest in opening the rest. So, he's the only one with several presents still in their paper, waiting to be opened!
Levi enjoyed rolling around in the fallout from the unwrapping and even got to watch as Mom and Dad helped him unwrap his gifts. He received a little less than his siblings (though Mom purchased many of Evan's gifts with Levi in mind as well) but I'm sure he wasn't bothered by it. He got some small wooden toys and a plush toy for tummy time fun. He also got some big-boy pacifiers in bigger size than the ones he had (plus they have surfaces for teething). He received a growth chart to hang in his room and a birth-cerficate pillow. All his siblings have one and so he was happy to be included in the club! He received a bunch of snazzy new babylegs (cause he's sooo stylish!) and a drum to bang on when he's sitting up.
Removing the illness factor, it was a very pleasant Christmas day and in a way, it was nice not having to worry about getting ready to host guests. I seriously hope tomorrow holds great improvement for all of us, healthwise. And Levi has an appointment for his six-month pictures tomorrow, so fingers-crossed he cooperates with that. With the other kids, I have professional pictures of them lying on their backs in just a diaper, playing with their toes. Levi can do this, but doesn't hold on as long, so it may be tricky catching this shot. I think I'll be thrilled if I can just get a picture with him smiling - that's the one thing he doesn't seem to want to do often in front of a camera.
His Stats:
Weight: 18 pounds, 8 ounces (approx 68th percentile)
Length: 26.25 inches (approx 43rd percentile)
Head Circumference: 16.75 inches (approx 18th percentile)
Here's our slideshow from Christmas Day... just plain ol' having fun. Enjoy!
Christmas Day Slideshow
Thursday, December 8, 2011
Getting Mobile
Every week, I'm updating the kids' individual pages but I haven't had an actual new post for a while. Today, I had something worth sharing, for sure! Levi has been gaining some mobility with all of his new-found skills. Throwing his legs around ends up moving him while he's on his back. And when he's on his tummy, he's constantly pushing with his legs, so in an effort to assist him in learning to crawl, I built him a crawling track!
It was fairly simple to build and modeled after this one:
The concept is that the walls keep baby traveling in a straight(ish) line and doesn't spin in circles. It's comfortable to lie on and gives a slippery enough surface to make for comfortable movement, yet also gives traction for pushing with toes, pulling with arms.
Ours is 48 inches long and approximately 16 inches wide (where baby lies). It's upholstered with 2 inch foam and vinyl fabric. Hopefully it holds up until he's done with it and on to walking! Here's a video of Levi during his second experience with it. He gets a little extra help from his big brother at the end. One end is propped up on the Tumzee to provide just a little assistance from gravity as well.
I can't wait to see if this really helps him develop his crawling skills. I'd love to see him getting around by 9 or 10 months. That would be amazing!!
It was fairly simple to build and modeled after this one:
The concept is that the walls keep baby traveling in a straight(ish) line and doesn't spin in circles. It's comfortable to lie on and gives a slippery enough surface to make for comfortable movement, yet also gives traction for pushing with toes, pulling with arms.
Ours is 48 inches long and approximately 16 inches wide (where baby lies). It's upholstered with 2 inch foam and vinyl fabric. Hopefully it holds up until he's done with it and on to walking! Here's a video of Levi during his second experience with it. He gets a little extra help from his big brother at the end. One end is propped up on the Tumzee to provide just a little assistance from gravity as well.
I can't wait to see if this really helps him develop his crawling skills. I'd love to see him getting around by 9 or 10 months. That would be amazing!!
Monday, November 21, 2011
Bring on the Bird!!
It's official. School is out for the next week and my dear hubby is home for the punishment, er, pleasure of having 6 of us (plus 3 kitties) crammed into our home for the next 7 days. Oh, and if we're lucky, we'll have 5 extra friends joining us for the big T-Day!
Typically we travel to family on the official start of the winter holiday season, but this year, with a one-year-old who is determined to destroy whatever he can conquer or reach and a baby who likes to doze off every 2 hours, it seems safer to take on the task of making our own meal and staying safely within the confines of our childproofed home! This means careful planning to create a delicious and home-cooked meal on Thursday. In my husband's eyes, this means abandoning hopes of baking my own pumpkin pies *sniff* and skipping the green bean casserole. *gasp!* But there's a 16 lb Tom cooling his heels in the fridge and plenty of sweet potatoes to go around. I even heard a rumor that someone invited Mrs. Smith, who decided to send 2 pies and some whipped cream in lieu of her attendance. Hooray!
Next year we'll still have a one-year-old who will likely be a whirlwind of destruction and so we'll probably be at home again. I'll take advantage of that time to be certain to get all stressed out over how I'll manage to make everything from scratch. Until then, I'll just enjoy my semi-homemade Thanksgiving dinner in my own home with my loving family (and good friends - hopefully) and say, "Bring on that Bird..."
Typically we travel to family on the official start of the winter holiday season, but this year, with a one-year-old who is determined to destroy whatever he can conquer or reach and a baby who likes to doze off every 2 hours, it seems safer to take on the task of making our own meal and staying safely within the confines of our childproofed home! This means careful planning to create a delicious and home-cooked meal on Thursday. In my husband's eyes, this means abandoning hopes of baking my own pumpkin pies *sniff* and skipping the green bean casserole. *gasp!* But there's a 16 lb Tom cooling his heels in the fridge and plenty of sweet potatoes to go around. I even heard a rumor that someone invited Mrs. Smith, who decided to send 2 pies and some whipped cream in lieu of her attendance. Hooray!
Next year we'll still have a one-year-old who will likely be a whirlwind of destruction and so we'll probably be at home again. I'll take advantage of that time to be certain to get all stressed out over how I'll manage to make everything from scratch. Until then, I'll just enjoy my semi-homemade Thanksgiving dinner in my own home with my loving family (and good friends - hopefully) and say, "Bring on that Bird..."
Saturday, November 5, 2011
A Random Heartwarming Thought
I had about half an hour to spend with just Evan this evening as I was putting him to bed. After the obligatory diaper change and some silliness while reading the bedtime story, it suddenly hit me ~ life will be like this with Levi too. Someday he will be walking and laughing and rolling around on the floor. He'll even be talking as well as Evan (who understands everything you say but doesn't articulate as well as some other kids his age). That thought instantly brought a smile to my face. It was the difference between knowing this (because I've read it somewhere or have been told this by experts or other parents) and really truly feeling it in my heart. It was a good moment for me. I hope I'm able to hold on that in the coming months as we work on overcoming whatever challenges may lie in store for us.
Friday, November 4, 2011
Challenges
Every life has it's challenges; every day of my life has it's own. Some are big and some are small, but the common factor is that each requires extra effort to figure out a way through the problem. This week, my challenges were many, but most centered around time management (ugh!) and finding a way to get Levi's new supplement into his diet.
Nutrivene-D is an antioxidant supplement designed specifically for people with T21, but it's bitter and as a powder, needs to be mixed into some kind of food that can hide the taste. Unfortunately, that plan didn't work out for Levi as it seems his system isn't quite ready for solids yet. (see Levi's Happenings & Stats for more details) So I got some advice to try using an oral syringe to squirt it into the back of his mouth between the cheek and gum to bypass most of his tastebuds and !VOILA! it seems to be working; crisis averted!
Now to look at that time management issue...
Nutrivene-D is an antioxidant supplement designed specifically for people with T21, but it's bitter and as a powder, needs to be mixed into some kind of food that can hide the taste. Unfortunately, that plan didn't work out for Levi as it seems his system isn't quite ready for solids yet. (see Levi's Happenings & Stats for more details) So I got some advice to try using an oral syringe to squirt it into the back of his mouth between the cheek and gum to bypass most of his tastebuds and !VOILA! it seems to be working; crisis averted!
Now to look at that time management issue...
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